I just found this picture. April 1st, 2013. Day 1 post-op.


Reblog this if you have chiari and you want people to educate themselves!

Tonight I cried because I am so glad I am alive. I really am. Even when I am in pain, stressed, anxious, or upset- I am deeply glad I am alive, deeply glad I am experiencing life, deeply glad I am able to talk and walk. 


Chiari Malformation is a rare brain disease that causes headaches, fatigue, muscle weakness, and in some severe cases even paralysis. Only 1 in every 1,000 births has this disease. Currently there is no cure and those who do have Chiari go through surgeries and intense pain. In honor of rare disease day we need to raise awareness of this illness and the people who suffer from it. So that people like my friend Melissa can live a normal life without fear of the blinding pain, another surgery, or special medication.

(via welcometobangk0k)

This is my before and after picture from decompression surgery, 1-year post op.

I have a genetic malformation: Arnold Chiari 1 Malformation. I had decompression surgery (C1 Laminectomy and Duraplasty) in March 2013. Basically, I had part of the back of my skull and my first vertebra removed to make room for my cerebellum, and then I had a patch put over the new hole (pig heart patch) to make sure my brain didn’t fall out! 

My main symptom was very visible: the large white bubble in my brain stem is called a syrinx. Having this bubble is a condition called syringomyelia. As you can see, I am almost 100% rid of my syrinx. This is incredibly good news for me, because it means all of my symptoms that went along with Chiari are gone. This included vertigo, pressure headaches, light sensitivity, and numbness in my extremities. 

My “after” MRI also shows a large white area near my cerebellum. My neurosurgeon informed me today that my body is overcompensating for the new room it has in the back of my head, and is letting my cerebellum float freely (and I imagine, happily). It is not concerning, in fact it is a very good thing. The “before” image plainly shows a tightly packed cerebellum leaking into my brain stem.

 I am in awe of my neurosurgeon’s artistry with my head. There may be more to explain. Feel free to ask me any questions.

It’s been a while since I’ve posted on this blog. I wanted to say that I just had my 1-year post op check up with my neurosurgeon. It went really well. I’m going to put up a picture when I get home, MRI’s before and after. My syrinx is almost completely gone.

lanatheloser asked:
When were you diagnosed with chiari?

a little more than a year ago, December 2012.

From a Facebook group:

This is what our skulls look like before and after our decompression surgery (suboccipical craniectomy) for Chiari Malfomation. Prior to surgery, our skulls are too small and the cerebellum of our brains herniates out of the skull through the foramen magnum (the hole in the bottom of the skull where the brain stem and spinal cord meet),causing compression of the brain stem and spinal cord. (In some people, this compression also causes a cyst in the spinal cord, called syringomyelia.) Because this compression is at the center of our nervous system, it causes wide spread symptoms involving every part of the body. The goal of surgery is to create more space for our brains so they can move back up into the skull. This surgery is a treatment and NOT a cure.

Happy 8 months post op. I can finally see the hairs growing in when I look in the mirror.

Reblog if you’ve had brain surgery :)


Reblog this if you’ve had brain surgery and you’re surviving!!!